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Clinical observations

Items in this group
Symptom onset datestamped 

Period in which the first symptoms manifested, as reported by the individual or their family. Any symptoms which were not considered abnormal at the time, but can retrospectively be attributed to the disease, should be considered as well. If the value is Asymptomatic, this item must be collected at each update until the individual shows first symptoms. If the value is not Asymptomatic, the datestamp is irrelevant and therefore not required.

This item refers to symptoms of DMD or BMD. If the value is not Asymptomatic, the date must be specified in Symptom onset date, if known.

Item type: single selection
Consistency rules:

If values for both this item and Symptom onset date are provided, they must be consistent.

Related items in previous version: 7.01
Usage in other datasets: SMALGMD
Value ID Description Classification
Neonatal onset

Neonatal onset (within the first 28 days of life)
Pediatric onset

Pediatric onset (between 28 days and 15 years)
Infantile onset

Infantile onset (between 28 days and 1 year)
Childhood onset

Childhood onset (between 1 and 5 years)
Juvenile onset

Juvenile onset (between 5 and 15 years)
Adult onset

Adult onset (16 years or later)
Young adult onset

Young adult onset (between 16 and 40 years)
Middle age onset

Middle age onset (between 40 and 60 years)
Late onset

Late onset (60 years or later)
Asymptomatic

Asymptomatic
Symptom onset date

Date of the onset of the first symptoms as defined in the item Symptom onset. Registries may ask for the onset age in their data collection form and calculate the date from the date of birth.

Item type: date
Related items in previous version: 7.02
Usage in other datasets: SMALGMD
Record

Height CR    longitudinal     

Height CR 

Height or length of the individual, as directly measured or calculated using the method specified in Height measurement method.

Item type: decimal
Unit: centimetres
Related items in previous version: 8.03
Usage in other datasets: SMA
Height measurement method CR 

Method used to obtain the value of Height.

Please note: Standing and Recumbent methods will not give accurate results where contractures and/or significant scoliosis exist. Arm span method will not give accurate results where arm contractures exist. In these cases, the Ulnar length method should be used.

  • Standing height: Person length (height) is measured using a vertical length scale. The person would stand with footwear removed over a fixed platform or the floor and an unfixed headboard would be adjusted to the top of the head. Record the measurement to the nearest cm mark.
  • Recumbent length: Employment of a horizontal length scale (or bench with steel ruler or tape). The person is placed flat on the horizontal measuring board, with footwear removed. The head should be placed against the fixed headboard, and the footboard adjusted so that it is against the base of the feet. Record the measurement to the nearest 1/2 inch / 1 cm.
  • Arm span: Measure using a flexible tape, from the tip of the middle finger of one hand to the tip of the middle finger of the other hand. The person stands with their back to the wall, with both arms abducted to 90°, the elbows and wrists extended and the palms facing directly forward.
  • Ulnar length: Measure between the point of the elbow (olecranon process) and the midpoint of the prominent bone of the wrist (styloid process) (left side if possible). If using this method, the body height calculated from the measurement is to be provided.
Item type: single selection
Related items in previous version: 8.04
Usage in other datasets: SMA
Value ID Description
Standing height

Standing height
Recumbent length

Recumbent length
Arm span

Arm span
Ulnar length

Ulnar length
Weight CR  PR  longitudinal 

Weight of the individual.

Item type: decimal
Unit: kilograms
Related items in previous version: 8.08
Usage in other datasets: SMA
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